What's in a name?
ASD assessment/ diagnosis is like a teenager’s bedroom…a complete mess in need of a major clean up!
In the same way that we often avoid dealing with that disastrous room and leave the mess piling up until we just can’t stand it anymore or it is too difficult to actually find the path from the door to the bed, we have left it for far too long with ASD diagnosis.
A study last year revealed health professionals vary greatly in how they assess for and diagnose ASD. Then, early this year, we saw the release of a study showing the huge increase in numbers diagnosed with ASD is mostly due to clinicians diagnosing much milder symptoms as being part of the Autism Spectrum.
Clinicians using terms such as “Autism traits, a sprinkling of Autism, a touch of Autism, features of Autism” haven’t helped this situation at all. Nor have those who’ve decided to diagnose children clearly not on the Autism Spectrum with an ASD just because they’ll access more funded support. And then there are those who use their own “experience” as yardsticks when comparing what ASD is and what it is not (i.e., differential diagnosis) rather than making use of standardised assessment tools. Like getting across a very messy bedroom full of rubbish, making sense of this all now seems almost impossible…almost.
Enter the plans for national assessment guideline to be released this September. Finally, an attempt to try and bring clinicians across the nation into alignment on some form of standardised approach to the diagnosis of ASD. Why the big fuss about labelling kids? What’s in a name? Well, although we would like to be idealistic and imagine that funding via the NDIS and related schemes (e.g., Medicare, school funding for a teacher’s aide etc) will become needs based, not label based, we are living in a fool’s paradise if we think that will actually eventuate. Read the fine print in the NDIS documents as an example and you will see that there are appendices that list groups of children based on their diagnosis. Those with clear cut diagnoses are on a more straightforward pathway to funded supports than those without one who have to substantiate their claims for support much more rigorously. We are all too familiar with the education system where certain labels attract more funding and aide time than others.
With the dawning of new ASD assessment and diagnosis guidelines what might be the best starting point in cleaning up the mess? Training, training, training! We need to be training up more clinicians in assessment procedures and relevant gold standard tools. Multi-disciplinary assessments with consensus diagnosis might be one of the best models to aim for but in remote and regional areas that is a dream not a reality. And, given that more people are seeking diagnosis we don’t want to create a bottle neck by farming more families into fewer state of the art assessment teams because we think that only a multi-disciplinary assessment will cut it. Rather, let’s train more clinicians so that regardless of whether they operate in isolation or in a larger team, they are all across the details of what tools to be using, what questions to be asking, what to be watching out for in the kids they see.
The longer we all continue to mess up the diagnosis of ASD, the more confusing we are making it for families too. Being told to get second and third opinions; begin told to explore bizarre interventions with funky acronyms (honestly, since when did repeated brushing or riding a horse have anything to do with directly addressing a child’s social-communication difficulties!?) or being told to “wait and see” are common experiences for families who have all seen someone who clearly has no protocol to follow when it comes to ASD assessment. Like cleaning up that bedroom after leaving it for far too long, let’s get rid of the junk we have been holding onto for years for no good reason. Let’s strip assessment and diagnosis of ASD back to the procedures and tools that have been proven to be effective and offer a common-sense approach.
Dr Anne Chalfant
Director and Clinical Psychologist of Annie’s Centre